What a Trooper...

With Skylar bouncing back from our last ditch efforts, we're filled with joy and thanksgiving for more days with our amazing little girl. She's such a fighter and I am in awe of her strength, spirit, and will to live. I honestly don't know what I am going to do with myself when she's gone... For now though, I am not worried about it because I am continuing as her full time mom and caregiver and enjoying every moment. Well, maybe not every moment...

Skylar's antibiotic that we had her on as a precautionary measure has caused explosive diarrhea!!! And not just a leak out the side of the diaper either... there have been several days now where the poo is literally up to the base of her neck or her arm pits (see above :)
Luckily, the two times it has covered her body, our hospice nurse was on her way to our house to check on us and was able to help me. I don't know what I would've done without her except call my parents or a neighbor friend to come over, because there's no way I could do it by myself. Skylar is floppy all over (she can only move her arms and hands a little bit at this point - maybe wiggle her feet on a good day too) and to clean her whole body without a limb flopping back into the poo or stressing her out is near impossible. I can't lift her unless I have both arms supporting her body, which leaves me nothing to pull out the nastiness underneath her let alone wipe her down and change her outfit. Thankfully, her dirty diapers haven't been too smelly :) Regardless, I would much rather have a baby with explosive diarrhea than no baby at all!!!

Skylar's not been extremely happy this past week even though she's doing really well off bi-pap during the day and I think those teeth might be trying to work their way through. She's got a pretty serious ridge showing on the top and you can see shapes starting to take form where her two front teeth are going to be. I know I said this 5 months ago, lol, but I think her teeth are coming in! It sucks because she can't ease the pain by chewing on anything and she can't swallow the extra saliva being produced so it seems miserable for her, but she's a trooper and she's surviving. She's just recently started to close her mouth and attempt to "suck" on her lips even though she doesn't have the strength to suck or chew. I've attempted to give her a pacifier again (she gave that up at least 6 months ago) to help her teething but she doesn't have the strength to hold it in and it just creates more drool and causes me to suction more. I am just massaging her gums for now in hopes of relief.

As far as help in the home goes, our hospice nurse is coming twice a week for an hour at a time... It's kind of a disappointment after hoping for 6 hour a day help, but she's had perfect timing when I needed her so far. I pray that continues! In the meantime, we're fighting to get in-home nursing in addition to hospice until our medicaid kicks in. Our medicaid application is still taking forever, and we're continuing to get notices that we're missing such and such or there's been a set back because of so and so. With our diagnosis, there shouldn't even be a question whether or not we qualify. We started the process in May and my blood could boil thinking about the whole thing so I'm going to switch topics :)

This past weekend we had the honor of having Annie's mom come all the way from KY to stay with us to meet Skylar while Kyle was out of town for a night. It was wonderful to have time to talk, cry, laugh, and share stories with one another. I was so happy she had a chance to meet Skylar, who is so much like Annie (except Annie had fire orange hair :) and she seemed to really enjoy the time with us too. It's been so fun getting to meet all of our "SMA friends" in person over the past month since we only get to talk on the phone usually. Here are some pics from Nora's visit two weeks ago...




Drumroll please.... We have a van coming!!! One of my long time friends from grade school has a mom with a minivan who doesn't have a need for a van anymore as long as she has a vehicle of some sort. She's offered to trade vehicles with me for as long as I need it so we get her minivan while she takes my blazer. This is a huge blessing because we really couldn't afford to take on a monthly payment from leasing or buying a van and didn't want to use all the money in savings to buy a used one. All of the incredibly gracious donations received have been going to medical bills and supplies for Skylar. We have a little bit saved up that we could have put towards a van, but didn't feel like that was a wise use of the money given to us. Secretly, I was hoping that we would get the extreme makeover and they would throw in a van with the new house :) Oh well. No news on that by the way. They started in Baltimore and were in Nashville, TN last week so if they come to Atlanta, I have to assume it would be soon since they're headed our direction, but I haven't heard anything at all.

I think those are all the updates for now :) A quick shout out to the moms at my church who have been such an amazing support to me the past two weeks (and really since the diagnosis) Thank You!!!

Peace.

Record Lows...

So I thought I was speechless the week before I wrote the last post, but I had no idea the silence that would come from a complete lack of words the past two weeks. I've been telling people for almost a week that I am trying to update the blog, but I honestly didn't know what to say, and still don't really, but I'll do the best I can. We're on this extreme emotional roller coaster right now...

Labor Day weekend, a lot of my family came down from Indiana to meet/see Skylar and celebrate my birthday. I was hoping for a good weekend, but wasn't too optimistic after the incident on Friday when her stats weren't looking so good. Saturday, Skylar struggled off bi-pap pretty much from the moment we took her off. She wasn't crying in a lot of pain, but she certainly didn't look happy or comfortable either. After a few hours, we put her back on bi-pap because it just seemed to help her more. We were thinking that all of the rest on bi-pap Saturday might help her have a better day Sunday, but it was quite the opposite. Sunday, we tried to take her off bi-pap and she cried like she was really in pain for the few minutes we had it off to run the cough assist. It was heartbreaking. There's a whole other element when people are around too - you want Skylar to have a good day so that's how they remember her... you don't want to freak people out if something bad happens, and many more thoughts go through my head, but I'll spare you.

Back to the weekend... Knowing that she doesn't make a lot of sound unless she needs something, when she does make sound - especially "loud" for her, it's a big deal. We put her back on bi-pap and she was better temporarily. Still not happy, but not in pain. Then, for seemingly no reason, she started fussing and crying - eyes pink, face flushed, tears streaming, mucous/drool pouring out of her mouth, and these awful little cries. It was horrible. We asked my family to leave, even though they were leaving that night to go back to IN, because we needed to process everything and care for Skylar without worrying about what everyone else is thinking and freaking them out. I hate that we had to say good-bye like that, but they understood. Ashley Manross came over that evening to possibly offer some insight with her experiences and just be a support to us (mainly me :) It was helpful and eventually Skylar calmed down and was able to get some sleep. Monday was another horrible day with painful crying, sad faces, uncomfortable movements, and just a rough day period.

I listened to her lungs and they sounded perfectly clear. I ruled out pneumonia, a cold, or anything like that because she didn't have fever, no gurgle in her lungs, and didn't have any other signs of illness. I didn't think it was a collapsed lung because I had been told that if it were, Skylar wouldn't be able to keep a high oxygen level on bi-pap and she was doing just fine. I called our pulmonologist, but she was out of town for the week. I called our pediatrician who was gone for labor day but would be back that night and said he would come over to meet with us and evaluate her. Her lungs sounded good to him too and we tossed out the thought that her body just might be quitting on her and this could be the end. I called an SMA researcher out in Utah who has focused her career on SMA (she's also a neurologist) to get her input and she said there were a couple last ditch efforts we could try before we accepted this as the end. Just in case those didn't work though, we decided it would be good to get hospice in place.

Side note: We had just been approved for in-home nursing and they were supposed to start the Tuesday after labor day. The really crappy thing about insurance is that they will not cover in-home nursing and hospice at the same time so we had to cancel the nursing after all the work to get in approved and sign up for hospice instead. SOOOOOOOO Frustrating! The crazy thing is that we need in-home help now more than ever because she's struggling more, but apparently insurance doesn't look at it that way! They pay hospice a daily rate instead of per hour or per item so all other care is void. In-home nursing was going to be my help, my relief. However, I am okay with letting it go because I know hospice is better for Skylar right now, even though it would be nice to have both...

Last Ditch Efforts: We increased her bi-pap pressures and her cough assist pressures and put her on an antibiotic just in case something was starting. We met with hospice to learn more about what they can do for Skylar and got that set up. They care for children of all ages dealing mostly with pain and symptom control, counseling if needed, and communication with doctors. Basically, for us, they are going to be our pain management team from here on out and are also supplying us with equipment and supplies. A nurse will come to our home weekly or as needed to evaluate Skylar (check her lungs, vitals, etc.) and to make sure we have what we need - including morphine and other medications just in case. It doesn't mean we think she's going to die in the next few days (although when we set it up, we had those thoughts) but we're just wanting to be more prepared in case something does happen...

We were really surprised how fast things happened and how unprepared we felt. I had been putting off thinking about hospice, burial, etc. for obvious reasons, but since my last blog post, we've been forced to go there, which was good for us. Don't get me wrong, it totally sucked, but we needed to figure out what to do when the time comes. With that said, if you've called us in the past week or two and haven't heard from us, we haven't really been up for talking. Sorry. It doesn't mean we don't love you... We've hit record lows in our lives - Skylar's oxygen was at an all time record low at 40 about a week ago, while Kyle and I have never been so devastated and at an emotional low point with the whole situation. We were preparing to say good-bye to our little girl, which is something you can really never prepare for. I recall saying, "The whole thing just sucks and there aren't really words to describe it, other than I have a slight glimpse into what Jesus meant when he said, "My soul is overwhelmed with sorrow to the point of death" in Mark 14. I can only say that I have an extremely heavy heart right now and fear what it will be like to hold my baby while she dies and watch her body fail her." As someone who likes talking to anyone and everyone about anything, all I wanted to do is sit with my family and cherish every minute of it without any interruption from the outside world.

The good news is that she's bounced back a little bit. I wrote in an email, "We had called in hospice, they came yesterday morning, we had morphine and other heavy drugs brought to our house, and they told us what her death might be like to prepare us... Not the best morning I've had to say the least. After they left, we took Skylar off her bi-pap to do the cough assist and suction her out and get her machines cleaned out, and she surprised us. After we got all the junk cleaned out, instead of painfully crying like she did the day before, she actually smiled. I can't tell you how much that was needed for Kyle and I - to have our spirits lifted. She seemed almost to be back to her old self and actually gave us a giggle or two. I told Kyle that she heard hospice talking and decided to get her act together, lol. She was able to hold her own for 4 hours or so. Anyway, we are still keeping things in place just in case it was a temporary good day, but we're clinging to that good day with hope for more."

Since then, we've had good days and bad, and continue to take things a day at a time... We're still not entirely ready to be social again as her days bounce back and forth, and therefore, our emotions and everything else that goes along with that do too. For example, two days ago was a little rough. Skylar was holding good oxygen levels, but at the sacrifice of her heart rate which was competing with that of a humming bird so we put her on bi-pap pretty much the entire day to give her rest. Yesterday was a great day. Not only was Skylar holding great numbers (oxygen and heart rate) all afternoon off bi-pap, but Nora Gooden and her parents dropped in to say hello after visiting the GA Aquarium before heading back to TN. It was incredible to see this amazing little girl in person after watching all of her you tube videos and keeping up with their blog. Her half-toothed smile and sounds that showed off her personality seriously melted my heart!!! Watching Skylar see another type 1 girl for the first time was fun too because Nora was laying down on the same level as Skylar and was able to communicate in ways I am sure we will never know. Skylar was locked on Nora and was even more talkative after hearing Nora's vocabulary :) It was just a fun day. I'll be posting pictures soon! Today was a good day too. Skylar seems to have a new favorite movie instead of Cars... it's now Finding Nemo. She has consistently smiled every single time the past few days whenever Dori tries to speak whale - one of the cutest things I've seen! Hopefully I can update you with more good days coming this weekend.

Now that we've updated you with the major changes, hopefully they won't be as lengthy unless something else happens... I am going to stop promising to make them shorter, because I feel like they just get longer. Sorry! Thanks for reading :) Stay tuned for more pictures. Peace.

Downs and Ups...

Lots to update you on... This is going to be a long one, just warning you! However, I just posted pictures to give your eyes a break first and for you to enjoy :)

I have to apologize for not posting sooner, but the week after my last post, we had one of the worst weeks thus far to the point where we thought we were going to lose her. I just couldn't bring myself to post anything because I honestly didn't have the words. It was miserable, torturous, and full of struggling on all levels (physically for Skylar, emotionally for us, etc.). It was a really really long week... To top it off at the end of the week, Kyle watched her oxygen levels drop to an all time low in the 40s while I was at church (we take turns going to services) so when I got home, Kyle was sitting with her on his lap - he looked like he had just been hit by a truck and Skylar was still struggling in the 80s. Later, he told me what happened, how she turned blue and looked pretty much dead. We were beginning to think it was the end. A full week of struggles was new for us - usually it's just a day or two at most. I went to him sobbing one night because I didn't know how much more I could take. Being with her all day and watching her fight for her life constantly was hell for the both of us.

I went back to the beginning of the week when it all started and tried to figure out what had changed... If nothing had changed, then we were thinking her body was shutting down, but we had just switched to a new bi-pap mask. I immediately got on the phone with TJ (Nora's Dad) in TN because I knew they had ordered the mask for Nora. TJ's wife, Jaime, had posted something on the SMASpace (networking site for SMA parents) about the mask having an extremely high leak rate. After speaking with both of them, I started comparing that mask to our previous mask and realized the exhalation ports were extremely loud and didn't have caps to cover them like our old one did. Obviously, Skylar still needs to exhale so we don't want to cover both of them, but we decided to cover one of them to see if that helped. Night and day difference. Skylar seemed much more rested and was much more prepared to handle breathing on her own during the day after we blocked one. The next few nights we kept the port covered and she's been back to her old self :) It's amazing how one little change can affect her fragile body to the point of life or death. I put in a call to her pulmonologist to let her know what's been going on and she was okay with us blocking one of the ports.

This past week she was full of smiles and giggles again, which was amazing timing for my birthday. I had one of the best birthdays - Kyle made me breakfast in bed, Skylar had an awesome day and just seemed really happy, Ashley Manross brought me lunch and stayed to talk with me, and then that evening, after we had her on bi-pap, my in-laws came to babysit while Kyle took me to a Braves game. We got to witness a grand slam which I haven't seen in at least 15 years - Go Braves! This week has been really awesome. I have had a lot of wonderful friends come visit - and I got to meet Nora's mom, Jaime, who was in Atlanta for work. She came over and got to meet Skylar and it was just really nice hanging out with another SMA parent who understands everything, which is why I enjoy my hang out times with Ashley Manross as well. It's so rare to find someone who truly understands what it means to be an SMA parent - no matter how many times you've been to our house, seen the machines, witnessed us suctioning or doing the cough assist after her oxygen drops, etc... it's different to live it 24/7 and I am very thankful for the Manross Family, Gooden Family, Grimes Family and Miller Family and the support they've been.

Speaking of being thankful for support, our church continues to be amazing with friends and acquaintances bringing us meals. The messages on Sundays have been so comforting and encouraging recently even though they would probably seem "difficult" to hear for people in "good" situations or maybe not seem relevant. On Aug. 22, Kris (our pastor) spoke about going through life crisis events and hanging on for dear life hoping to make it through... and when the "shaking" is over, you're left with the stuff that matters. One scripture he mentioned was "For surely I know the plans I have for you, says the Lord, plans for your welfare and not for harm, to give you a future with hope." That scripture sounds awesome taken out of context, but God was not promising an easy life... this was said right before the children of Israel were hauled off for 400 years of slavery!!! I'll keep it at that, but it was super awesome to hear and a reminder to ask God for endurance through the tough times. That Sunday was the start of our really bad week I mentioned at the beginning of this post... I am continually amazed how the messages at our church have completely paralleled our lives, specifically, my thoughts and struggles... It's just reassuring to know that I am not alone and that God is with me and is using scripture, our pastor, and the body of our church to speak to me. If you want to listen to any of the sermons, check it out!

I am also continually learning that I am not in control and I have to trust God that He is in control. Today, as a friend was over getting some preggo stuff from me, Skylar's pulse-ox alarm went off. Not typically startling, as this happens frequently in the evening as she gets tired, so I wasn't freaked out... until I looked and saw that her oxygen was not what set off the alarm, but her heart rate. This has happened once before where her heart rate dropped low but came back up right away and I just assumed it was a sensor glitch. Today was different. Her heart rate stayed low for a while, her oxygen then dropped (I'm guessing because the blood wasn't carrying the oxygen like normal since her heart wasn't pumping like it normally does) and she went pale. Ususally, if it's an oxygen problem, she turns blue, but this was all around different. I was more in shock than anything because I can't do a darn thing about her heart stopping. If I did any sort of chest compression, I would probably break all of her ribs, which would be so much more painful than anything else, especially since her problems are respiratory. What's weird was that I was just telling someone that we've been praying that her heart would stop so it would be a quick and painless way to go (at least not as painful or scary as not being able to breathe, starving to death, etc.). Nobody wants to see their child suffer... I ran a cough assist to pull any mucous out in case that was a problem and her oxygen came back up and her heart rate came back up halfway. Over the next 5 minutes, it returned to "normal" for Skylar which is insanely high for anyone else. I put her on bi-pap soon after to give her a break after calling her pediatrician since our pulmonologist is out of town (great timing, right?!). Luckily our pediatrician is awesome and has actually had hands-on SMA experience and is just a super amazing guy. Back to the point - all of these things are completely out of my control and I am trusting God (and learning to trust Him still) with the things I hold closest to my heart, including Skylar. It obviously sucks that anyone should have to go through this... I think of the awesome SMA families I've met who are all young, attractive, and just great people all around. It totally sucks. But, I know through this "shaking" that Kyle and I are learning so much, we're gaining so much perspective on what matters, growing as individuals and as a couple, and are going to come out better people than when we started...

We're hoping for a better weekend as we have family in town for labor day! With that said, I better get going. Thanks for reading my book this time :) Sorry I had to wait so long to post an update. I promise I'll try to be better about that! Peace.

PICTURES!!!

Hey Everyone -

Here are some pictures for your enjoyment and to update you on my growing girl :) She's getting cuter by the day! This also serves as a warning that there is a super long post coming... lol.

So the day we had visitors - including Lucy (3 years old) - this picture was taken. Skylar loved watching Lucy play with her plastic stack-able cups compliments of the Grimes Family.

Looking up at Corrie while getting her head rubbed!

Skylar was laughing at mommy and watching her mobile in this one :)

Skylar's eyes continue to captivate me... she's so gorgeous! She has her Daddy's lashes - Kyle looks so freakin' cute as a girl, lol!!!

Hope you enjoyed the update through pictures :)